Referral to Mayo declined for Autoimmune or Unknown Condition

Posted by kspiel @kspiel, Dec 12, 2017

I’ve posted in this thread a few times, as my wife has been very and increasingly ill for 12 years. Her disease is debilitating, and like many of you in this group, she’s been labelled an attention seeker, a chronic complainer, etc., etc., etc. I am not certain that her illness is autoimmune, but I suspect it very strongly. Her symptoms are widespread (intestinal, epidermal, muscular/skeletal, and on and on). Recently, her family doctor in Canada, where we live, made a referral to Mayo which was highly detailed, chronicling her complicated medical history, progression of symptoms, and the day to day grim reality of this progressively treacherous disease. To our utter shock and disappointment, we received word today that the referral had passed through internal medicine, down to gastroenterology, and was, with regret, not accepted. According to the letter, they felt there was nothing to be done. I can’t say how disheartening this news is. A young and vibrant person that I love is ill and suffering desperately.

Our doctor has promised to write a strident letter of appeal. I called the international appointments office today, and the representative I spoke with said that she would be sure to resubmit our application, and advised that we wait until the doctor’s appeal is received also, so that that can be reviewed along with the referral. I am anxious to hear if anyone has a similar experience of at first being denied an appointment, and through contestation eventually received one. I fear that our window of opportunity to receive meaningful treatment is shrinking.

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@peewee7631

I am beside myself. I’ve heard that the Mayo Clinic is the place to go when all else fails. I’ve have been bedridden ,mainly, for 6 years. They know I have high inflammatory markers, and say “ you have an autoimmune disease” yet they don’t know which one…or what is causing this inflammation. I requested an appointment with Mayo in Florida and was told since my case is so complicated that I would have to go to Minnesota, because they have more of the resources for my case there. So I immediately do a phone interview, and receive a latter 4 days later , stating that they are overwhelmed with tons of cases to choose from and after reviewing my case feel I should continue to seek my medical journey where I live. Am I missing something here? I’ve lost my life… no one here can give me a straight answer as to why my joints are in tremendous pain.. if I try to even go out to dinner, I end up in bed for weeks on end feeling like I have the flu. I am very fatigued but can not sleep. All I survive on is pain meds. So … can any one tell me why they think Mayo Clinic would deny people with similar issues. I thought that they were the ones to go to when all else fails. SMH…. ?

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I also thought they were the ones to go to…big mistake! Be very happy they denied you and seek a place that cares about more than money!
The surgeon and surgical dept he went to there was very good and did a great job but the neurology, endocrinology and patient assistance depts were a nightmare!

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@peewee7631

I am beside myself. I’ve heard that the Mayo Clinic is the place to go when all else fails. I’ve have been bedridden ,mainly, for 6 years. They know I have high inflammatory markers, and say “ you have an autoimmune disease” yet they don’t know which one…or what is causing this inflammation. I requested an appointment with Mayo in Florida and was told since my case is so complicated that I would have to go to Minnesota, because they have more of the resources for my case there. So I immediately do a phone interview, and receive a latter 4 days later , stating that they are overwhelmed with tons of cases to choose from and after reviewing my case feel I should continue to seek my medical journey where I live. Am I missing something here? I’ve lost my life… no one here can give me a straight answer as to why my joints are in tremendous pain.. if I try to even go out to dinner, I end up in bed for weeks on end feeling like I have the flu. I am very fatigued but can not sleep. All I survive on is pain meds. So … can any one tell me why they think Mayo Clinic would deny people with similar issues. I thought that they were the ones to go to when all else fails. SMH…. ?

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Hi, I am so sorry you are going through so much. What you describe is almost exactly what I have been through. It took a long time to get diagnosed. It started with Fibromyalgia then Rheumatoid Autoimmune Disease then Lupus. My RAD is systemic which basically means it is attacking my organs along with the Lupus. Once I went to a Rheumatologist and was diagnosed my life has gotten better. It has taken many years, but now I can go out to lunch or dinner and enjoy it. I spend a lot of time with my grandchildren. I even went on a field trip with one of my granddaughters. I will be honest, it was a push and I hurt like crazy afterwards. I was in bed for the next two days, but I did it! You need to be an advocate for yourself. I wish you well….

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@janett18

Hi, I am so sorry you are going through so much. What you describe is almost exactly what I have been through. It took a long time to get diagnosed. It started with Fibromyalgia then Rheumatoid Autoimmune Disease then Lupus. My RAD is systemic which basically means it is attacking my organs along with the Lupus. Once I went to a Rheumatologist and was diagnosed my life has gotten better. It has taken many years, but now I can go out to lunch or dinner and enjoy it. I spend a lot of time with my grandchildren. I even went on a field trip with one of my granddaughters. I will be honest, it was a push and I hurt like crazy afterwards. I was in bed for the next two days, but I did it! You need to be an advocate for yourself. I wish you well….

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Thank you Janett. I have been a fierce advocate for my son but I can tell that the doctors don’t really like that! I read about 4 hours a day. Since my son got sick, I have turned all my reading over to trying to find what is wrong with him. I don’t read garbage, I only read the studies done by huge teaching hospitals and those who study it. Mayo Rochester is one of my top sites to study. For some reason, Mayo Florida is not getting the trickle down of knowledge of autoimmune dementia/ encephalitis. For instance, Mayo Rochester, wrote a great paper on autoimmune dementia and my son was poster child for everything they wrote. I made a copy, dropped it off to his doctors and pointed out everything the paper spoke about and asked if they could try the intravenous steroids to see if he gets better because that’s what the paper recommended. I got an answer back from his neurologist and the psychiatrist that he saw one time for one hour. Both said that They hoped he was on depression meds so he could be helped. Did they even read the paper? I think not!

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I am beside myself. I’ve heard that the Mayo Clinic is the place to go when all else fails. I’ve have been bedridden ,mainly, for 6 years. They know I have high inflammatory markers, and say “ you have an autoimmune disease” yet they don’t know which one…or what is causing this inflammation. I requested an appointment with Mayo in Florida and was told since my case is so complicated that I would have to go to Minnesota, because they have more of the resources for my case there. So I immediately do a phone interview, and receive a latter 4 days later , stating that they are overwhelmed with tons of cases to choose from and after reviewing my case feel I should continue to seek my medical journey where I live. Am I missing something here? I’ve lost my life… no one here can give me a straight answer as to why my joints are in tremendous pain.. if I try to even go out to dinner, I end up in bed for weeks on end feeling like I have the flu. I am very fatigued but can not sleep. All I survive on is pain meds. So … can any one tell me why they think Mayo Clinic would deny people with similar issues. I thought that they were the ones to go to when all else fails. SMH…. ?

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@peewee7631

I am beside myself. I’ve heard that the Mayo Clinic is the place to go when all else fails. I’ve have been bedridden ,mainly, for 6 years. They know I have high inflammatory markers, and say “ you have an autoimmune disease” yet they don’t know which one…or what is causing this inflammation. I requested an appointment with Mayo in Florida and was told since my case is so complicated that I would have to go to Minnesota, because they have more of the resources for my case there. So I immediately do a phone interview, and receive a latter 4 days later , stating that they are overwhelmed with tons of cases to choose from and after reviewing my case feel I should continue to seek my medical journey where I live. Am I missing something here? I’ve lost my life… no one here can give me a straight answer as to why my joints are in tremendous pain.. if I try to even go out to dinner, I end up in bed for weeks on end feeling like I have the flu. I am very fatigued but can not sleep. All I survive on is pain meds. So … can any one tell me why they think Mayo Clinic would deny people with similar issues. I thought that they were the ones to go to when all else fails. SMH…. ?

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Hi @peewee7631,
I can understand your disappointment. Unfortunately Mayo Clinic has more requests for appointments than available openings. Availability of appointments at Mayo Clinic depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor).

You'll notice that I moved your message to a similar discussion in the Autoimmune Diseases group. Autoimmune disease is an umbrella term for so many illnesses, often with no clear cause or definite road to treatment. Keep asking questions, and seeking information. As @oldkarl said and I agree: Don’t Give Up.

If Mayo Florida deemed your situation as serious and complex, then Mayo Minnesota sounds like it should be the right place. While you can self-refer to Mayo Clinic, it can be helpful to have a physician referral, as they can easily transfer clinical findings, reports, etc. When making appointments for suspected autoimmune diseases, your PCP could contact the clinical division specific to the organ involved or area where there is most concentration of discomfort rather than applying to General Internal Medicine. Just a thought.

Have you considered getting your doctor to refer you to a specialist at Mayo or elsewhere?

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@drtapasgoswami

How do you know that they ignored your issues ? You are not a doctor. Mayo is one of the best in the country if not the best.

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Take off those rose colored glasses. I had them on too when I took my son to Mayo Florida and I’ve never been so disappointed! Mayo has a great reputation because they discover many diseases and successfully treat so many patients but many of us fall thru the cracks there, as everywhere else. My son had a very good surgeon at Mayo Florida but was almost ignored in endocrinology and neurology. Every health institution has good, bad and indifferent doctors. I find that many doctors lack empathy and maybe that’s how they are able to keep working as a doctor, but sick people need empathy. I also find that most doctors are not good listeners. They many times have their minds made up about what to treat you with and they don’t like a lot of input from their patients, even though the patient is the one that has been living with that body and that pain all their lives. Doctors should listen to the patient.

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Your local doctor can order the autoimmune panel from Mayo. You get your blood drawn locally and they send it to Mayo. It will tell you if you have autoimmune antibodies. If you do, then Mayo is much more likely to see you because you have something they study. I would recommend that you go to a hospital that studies autoimmune and read which doctors are known for this before you request an appointment. I would not recommend going to Mayo Florida but Mayo Rochester and the Mayo in Arizona are suppose to be very good at autoimmune. I think the panel is called the paraneoplastic panel. It can also pick up antibodies that you get when you have cancer. Anyone with autoimmune problems should have this bloodwork done.

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@nire

Take off those rose colored glasses. I had them on too when I took my son to Mayo Florida and I’ve never been so disappointed! Mayo has a great reputation because they discover many diseases and successfully treat so many patients but many of us fall thru the cracks there, as everywhere else. My son had a very good surgeon at Mayo Florida but was almost ignored in endocrinology and neurology. Every health institution has good, bad and indifferent doctors. I find that many doctors lack empathy and maybe that’s how they are able to keep working as a doctor, but sick people need empathy. I also find that most doctors are not good listeners. They many times have their minds made up about what to treat you with and they don’t like a lot of input from their patients, even though the patient is the one that has been living with that body and that pain all their lives. Doctors should listen to the patient.

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@nire I recently had the opportunity to listen to an extraordinary doctor at Mayo who is making a difference. Check out the Patient Revolution website https://patientrevolution.org/. – truly refreshing attitude. We patients just need to figure out a way to help.

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@nire

Your local doctor can order the autoimmune panel from Mayo. You get your blood drawn locally and they send it to Mayo. It will tell you if you have autoimmune antibodies. If you do, then Mayo is much more likely to see you because you have something they study. I would recommend that you go to a hospital that studies autoimmune and read which doctors are known for this before you request an appointment. I would not recommend going to Mayo Florida but Mayo Rochester and the Mayo in Arizona are suppose to be very good at autoimmune. I think the panel is called the paraneoplastic panel. It can also pick up antibodies that you get when you have cancer. Anyone with autoimmune problems should have this bloodwork done.

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I just returned from Mayo Clinic, in Rochester. My primary doctor spent over three hours with me. The other sub-specialists to whom he referred me spent over two hours with me. They listened to me, unlike 14 of the 17 doctors I saw over almost five years, before being diagnosed. They were also pleasant and at least compassionate. But I agree that there are good and bad doctors everywhere and we must still participate in our care. One of my doctors apologized and said she knows doctors have and can do damage, which I experienced in my journey to a diagnosis.

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@nire

Take off those rose colored glasses. I had them on too when I took my son to Mayo Florida and I’ve never been so disappointed! Mayo has a great reputation because they discover many diseases and successfully treat so many patients but many of us fall thru the cracks there, as everywhere else. My son had a very good surgeon at Mayo Florida but was almost ignored in endocrinology and neurology. Every health institution has good, bad and indifferent doctors. I find that many doctors lack empathy and maybe that’s how they are able to keep working as a doctor, but sick people need empathy. I also find that most doctors are not good listeners. They many times have their minds made up about what to treat you with and they don’t like a lot of input from their patients, even though the patient is the one that has been living with that body and that pain all their lives. Doctors should listen to the patient.

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@nite Over the last 30+ years, I have seen more than my share of doctors, due to lupus/kidney/cancer issues. I have campaigned to be treated as a part of my own medical care team. Sometimes this was met with sarcasm or put-downs, but often with relief as the professionals wanted someone who cared, and didn't want to leave it all to them. Those who failed, in my eyes at least, to treat me with respect, were replaced or at the least, given a stern "talking to" by me. I go into each appointment fully prepared with questions, notebook for writing answers, copies of labwork, asking for clarification as needed. There have been several doctors who have commented they wish patients took more interest in their disorders. It may not be the popular way to approach things, but it works for me.
Ginger

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@gingerw

@nite Over the last 30+ years, I have seen more than my share of doctors, due to lupus/kidney/cancer issues. I have campaigned to be treated as a part of my own medical care team. Sometimes this was met with sarcasm or put-downs, but often with relief as the professionals wanted someone who cared, and didn't want to leave it all to them. Those who failed, in my eyes at least, to treat me with respect, were replaced or at the least, given a stern "talking to" by me. I go into each appointment fully prepared with questions, notebook for writing answers, copies of labwork, asking for clarification as needed. There have been several doctors who have commented they wish patients took more interest in their disorders. It may not be the popular way to approach things, but it works for me.
Ginger

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I also go into appointments well prepared. As someone who has always been amazed by the body, studied pre-med and am a science nerd, I could have never imagined that my life would depend on my advocating for myself. Like you, I’ve had to replace doctors and assert myself because they refused to listen or dismissed me.

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@fmgeorge

I also go into appointments well prepared. As someone who has always been amazed by the body, studied pre-med and am a science nerd, I could have never imagined that my life would depend on my advocating for myself. Like you, I’ve had to replace doctors and assert myself because they refused to listen or dismissed me.

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fmgeorge, Most of us Boomers were raised that you didn't question authority, in this case meaning doctors. But my feeling back then they sope with trueness and comappsion! When I went through Stage IV colon cancer 20 years ago, I saw, "MY SURGEON AND MY ONCOLOGIST" everyday I was in the hospital! Now you see a different doctor every day who knows nothing about you! I have taken the attiude that they are working for me! If I feel they are not considering my betterment and blowing smoke up my A%$ I'm not affraid to say Bye to them in thier face!
A JOKE! It's like when you go to a funeral and a religious person is giving a Eulagy(sp?) about Old George who are they are buring and saying what a Great Guy Old George was, when in actuality he never meet Old George. And his wife would say what an Asshole Old George was! LOL!

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@sundance6

fmgeorge, Most of us Boomers were raised that you didn't question authority, in this case meaning doctors. But my feeling back then they sope with trueness and comappsion! When I went through Stage IV colon cancer 20 years ago, I saw, "MY SURGEON AND MY ONCOLOGIST" everyday I was in the hospital! Now you see a different doctor every day who knows nothing about you! I have taken the attiude that they are working for me! If I feel they are not considering my betterment and blowing smoke up my A%$ I'm not affraid to say Bye to them in thier face!
A JOKE! It's like when you go to a funeral and a religious person is giving a Eulagy(sp?) about Old George who are they are buring and saying what a Great Guy Old George was, when in actuality he never meet Old George. And his wife would say what an Asshole Old George was! LOL!

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Right On!!

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In reply to @sueleerock "Right On!!" + (show)
@sueleerock

Right On!!

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If I hadn't advocated for myself and researched online fibromyalgia rheumatica and giant cell arteritis, who knows what would bave happened to me. My new primary thought I might have fibromyalgia and gave me an anti inflamatory to take while on a European vacation. Told me to come back when I came home. Went, took blood work, sed rate up gave me 10 mg. Prednisone. By this time, my jaw hurt, neck pain, throbbing headache, eyes blurry. Made appt with rheumatologist. She ordered a biopsy immediately and gave me a prescription for 50 mg. Prednisone to take After the biopsy. Two days later, she called, biopsy positive for Giant Cell Arteritis. This all started at the beginning of July and biopsy result was at the end of August.

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